Short form of the Chinese version Diabetes Quality of Life for Youth Scale: a psychometric testing in Taiwanese adolescents with type 1 diabetes

OBJECTIVE

To test the psychometric properties of the short form of the Chinese version Diabetes Quality of Life for Youth scale (C-DQOLY-SF).

RESEARCH DESIGN AND METHODS

A 30-item C-DQOLY-SF was administered to 371 adolescents with type 1 diabetes. Exploratory and confirmatory factor analysis, correlation with HbA_1c, internal consistency, and test-retest reliability were used to examine the psychometric characteristics of C-DQOLY-SF.

RESULTS

A 25-item questionnaire with three correlated second-order factor structures best fitted data. Scores on the 25-item C-DQOLY-SF significantly correlated with HbA_1c values. Cronbach’s α and ICCs of each scale and subscale ranged from 0.77 to 0.90 and from 0.70 to 0.92, respectively.

CONCLUSIONS

The C-DQOLY-SF has satisfactory reliability and validity. The C-DQOLY-SF can be conveniently used in clinical settings to assess the quality of life of adolescents with type 1 diabetes.Pediatric health care providers are challenged to improve quality of life (QOL) in adolescents with type 1 diabetes (1). A 51-item Diabetes Quality of Life for Youth (DQOLY) (2) has been widely used (3,4) to assess the QOL in adolescents with type 1 diabetes. DQOLY is composed of life satisfaction, diabetes impact, and diabetes-related worry scales; however, construct validity had not been tested. For convenient clinical use, a 38-item short form of DQOLY (DQOLY-SF) (5) was adapted from DQOLY. DQOLY-SF includes scales of future worries, parental concern, impact on activities, impact of treatment, symptom impact, and satisfaction. Nevertheless, item of satisfaction scale overlapped with content in the other scales, which is problematic for managing discrepancies between different scales (5). The purpose of this study was to develop and test the psychometric properties of a short form of the Chinese version Diabetes Quality of Life for Youth scale (C-DQOLY-SF).     

Quality of Life of Children and Adolescents with Type 1 Diabetes in Kuwait

Objectives

To evaluate the health-related quality of life (HRQoL) of children and adolescents with type 1 diabetes (T1DM) in Kuwait using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scale and PedsQL 3.0 Diabetes Module, and to identify the risk factors associated with unsatisfactory QoL and their effects on metabolic control.

Subjects and Methods

A total of 436 patients (2–18 years) with T1DM (>6 months) and 389 healthy controls, with the parents of both groups, completed the Arabic Generic Core Scale. Those with T1DM also completed the Arabic Diabetes Module.

Results

The mean total score of the PedsQL Diabetes Module was 70.2 ± 9.8 reported by children and 59.9 ± 11.1 reported by parents (higher scores indicate better QoL). Young age and long duration of diabetes were associated with poor QoL (p < 0.001). Boys had better total scores than girls in most age groups (70.3 ± 9.3 vs. 52.3 ± 7.2, p < 0.001); however, girls did better than boys regarding treatment barriers and adherence (71.3 ± 7.8 vs. 68.1 ± 6.2, p < 0.005). Higher HbA1c values were associated with lower QoL scores (31.1 ± 5.1 at HbA1c of 15s% vs. 82.5 ± 6.1 at HbA1c of 6s%, p < 0.0001).

Conclusion

HRQoL of children and adolescents with T1DM was consistently poorer than controls. Parents consistently reported poorer QoL scores than their children. We recommend that more support should be provided for the care of children with diabetes in Kuwait.Key Words: Children, Adolescents, Quality of life, Childhood psychology, Pediatric Quality of Life Inventory     

青少年1型糖尿病患者心理韧性与其身心状况的关系研究

目的 探讨青少年1型糖尿病患者心理韧性现状及与血糖控制、糖尿病痛苦和生活质量的关系.方法 采用便利抽样法,选取2019年2月—2020年9月在南京市两所三级甲等医院门诊复诊或病房住院的360例青少年1型糖尿病患者作为调查对象.使用青少年糖尿病优势与韧性量表、5条目糖尿病痛苦量表、中文版简易青少年糖尿病生活质量量表及一般...     

The marital relationship and psychosocial adaptation and glycemic control of individuals with diabetes

OBJECTIVE: To explore the relationship between marital relationship domains (i.e., intimacy and adjustment) and glycemic control and psychosocial adaptation to diabetes. RESEARCH DESIGN AND METHODS: A total of 78 insulin-treated adults with both type 1 and type 2 diabetes were assessed on a single occasion. They completed two marital quality measures (Spanier Dyadic Adjustment Scale and Personal Assessment of Intimacy in Relationships Scale) and four quality-of-life measures (Diabetes Quality of Life Scale, Medical Outcomes Study Health Survey, Problem Areas in Diabetes Scale, and Positive and Negative Affect Scale). Glycemic control was assessed by HbA(1c). Demographic data (age, sex, type and duration of diabetes, years married, other medical conditions, family history, disability, and years of education) were gathered from the chart and questionnaires. RESULTS: Concerning psychosocial adaptation, both of the marital quality measures were predictors of aspects of adaptation. Better marital satisfaction was related to higher levels of diabetes-related satisfaction and less impact, as well as less diabetes-related distress and better general quality of life. Higher levels of marital intimacy were related to better diabetes-specific and general quality of life. Concerning glycemic control, there was a nonsignificant trend for marital adjustment scores to relate to HbA(1c) (P = 0.0568). CONCLUSIONS: For insulin-treated adults with diabetes, quality of marriage is associated with adaptation to diabetes and other aspects of health-related quality of life. The suggestive finding that marital adjustment may relate to glycemic control warrants further study. Future work should also explore the impact of couples-focused interventions on adaptation, adherence, and glycemic control.     

The PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and type 1 Diabetes Module

OBJECTIVE: The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents aged 2-18 years. The PedsQL 4.0 Generic Core Scales are child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL disease-specific modules. The PedsQL 3.0 Type 1 Diabetes Module was designed to measure diabetes-specific HRQOL. RESEARCH DESIGN AND METHODS: The PedsQL Generic Core Scales and Diabetes Module were administered to 300 pediatric patients with type 1 or type 2 diabetes and 308 parents. RESULTS: Internal consistency reliability for the PedsQL Generic Core Total Scale score (alpha = 0.88 child, 0.89 parent-report) and most Diabetes Module scales (average alpha = 0.71 child, 0.77 parent-report) was acceptable for group comparisons. The PedsQL 4.0 distinguished between healthy children and children with diabetes. The Diabetes Module demonstrated intercorrelations with dimensions of generic and diabetes-specific HRQOL. CONCLUSIONS: The results demonstrate the reliability and validity of the PedsQL in diabetes. The PedsQL may be used as an outcome measure for diabetes clinical trials and research.     

Good metabolic control is associated with better quality of life in 2,101 adolescents with type 1 diabetes.

OBJECTIVE: It is unclear whether the demands of good metabolic control or the consequences of poor control have a greater influence on quality of life (QOL) for adolescents with diabetes. This study aimed to assess these relations in a large international cohort of adolescents with diabetes and their families. RESEARCH DESIGN AND METHODS: The study involved 2,101 adolescents, aged 10-18 years, from 21 centers in 17 countries in Europe, Japan, and North America. Clinical and demographic data were collected from March through August 1998. HbA(1c) was analyzed centrally (normal range 4.4-6.3%; mean 5.4%). Adolescent QOL was assessed by a previously developed Diabetes Quality of Life (DQOL) questionnaire for adolescents, measuring the impact of diabetes, worries about diabetes, satisfaction with life, and health perception. Parents and health professionals assessed family burden using newly constructed questionnaires. RESULTS: Mean HbA(1c) was 8.7% (range 4.8-17.4). Lower HbA(1c) was associated with lower impact (P < 0.0001), fewer worries (P < 0.05), greater satisfaction (P < 0.0001), and better health perception (P < 0.0001) for adolescents. Girls showed increased worries (P < 0.01), less satisfaction, and poorer health perception (P < 0.01) earlier than boys. Parent and health professional perceptions of burden decreased with age of adolescent (P < 0.0001). Patients from ethnic minorities had poorer scores for impact (P < 0.0001), worries (P < 0.05), and health perception (P < 0.01). There was no correlation between adolescent and parent or between adolescent and professional scores. CONCLUSIONS: In a multiple regression model, lower HbA(1c) was significantly associated with better adolescent-rated QOL on all four subscales and with lower perceived family burden as assessed by parents and health professionals.     

糖尿病患者焦虑抑郁情绪与生活质量相关性研究

目的 探讨糖尿病患者的焦虑抑郁情绪与生活质量的相关性,为临床有效干预提供依据。方法对58名糖尿病患者采用汉密顿焦虑量表及汉密顿抑郁量表评定焦虑抑郁状况,采用糖尿病病人特异性生活质量量表评定生活质量,对测评结果进行相关分析。结果糖尿病患者焦虑障碍发生率为32．76％,无焦虑情绪者为27．59％;抑郁障碍发生率为22．41％,无抑郁情绪者为24．14％。伴有焦虑抑郁障碍患者糖尿病病人特异性生活质量量表总分及生理纬度、心理纬度、社会关系纬度、治疗纬度因子分均显著高于无焦虑抑郁情绪患者（P〈0．05或0．01）;糖尿病病程≥1a的患者糖尿病病人特异性生活质量量表总分均显著高于〈1a者（Pa〈0．05）。结论焦虑、抑郁情绪是影响糖尿病患者生活质量的危险因素,焦虑、抑郁情绪越严重,生活质量越差;病程越长,患者的生活质量越差。在治疗糖尿病的同时应对患者的心理问题进行干预和治疗,以提高患者的生活质量。     

Quality of life in adolescents with type 1 diabetes who participate in diabetes camp.

Quality of life in adolescents with Type 1 diabetes is a growing area of interest in pediatric research. The complex diabetes regimen imposes challenges for an adolescent. Adolescents diagnosed with diabetes are a group that appears to be at risk for having a poor health-related quality of life. Although research supports the positive relationship of social support and well-being in adolescents, there are few studies discussing quality of life in adolescents that are based on the factor of social support. This study compared the quality of life in adolescents with Type 1 diabetes who have attended at least one diabetes camp to the quality of life of those who have never attended diabetes camp. Results provided evidence of the value of social support.     

Living with haemodialysis: the experience of adolescents in Turkey

This study explored how adolescents receiving haemodialysis for end-stage renal disease were affected by their diagnosis and treatment. A qualitative approach was used, with data collected through individual interviews with 18 adolescents aged 12-20. Data were analysed using content analysis method. Adolescents reported physical, psychological and social problems. Compliance related to diet and fluid restrictions were issues for the adolescents interviewed. Body image problems related to physical limitations and the fistula were described. Their regular school attendance was reduced by the illness and therapy, as were socialization and peer interactions. Adolescents felt different from their friends/peers and had negative feelings about their future. Nurses need to assess each adolescent to determine their responses and take action to assist the adolescents with the many issues they are likely to experience. Parents and siblings, who contribute significantly to the care of adolescents on haemodialysis, also require support.     

Impact of the work environment on glycemic control and adaptation to diabetes

OBJECTIVE: To evaluate quantitatively whether the work environments of adults with diabetes relate to the adequacy of metabolic control and/or to the individual's adaptation to diabetes and to explore qualitatively the interactions between an individual's life at work and ways of coping with diabetes. RESEARCH DESIGN AND METHODS: A total of 129 insulin-requiring adults who were employed outside of the home were assessed on a single occasion. They completed two work system measures (The Work Environment Scale and The Work Apgar Scale) and two quality-of-life measures (The Diabetes Quality of Life Scale and The Appraisal of Diabetes Scale). Subjects also participated in a semi-structured interview concerning the interaction of work and diabetes. Glycemic control was assessed by using HbAlc results. Demographic data (age, sex, diabetes type, duration of diabetes, number of diabetes-related medical complications) were gathered from the charts. RESULTS: Concerning glycemic control, neither of the work system measures was a significant predictor of HbAlc. Concerning psychosocial adaptation, supervisor support was found to be a significant predictor of positive appraisal and diabetes-related satisfaction. Involvement and coworker cohesion also predicted aspects of diabetes-related quality of life. Interview themes showed that for a minority (18%), diabetes affected choice of work and that for a majority (60%), diabetes affected relationships at work and raised financial/job concerns (49%). Most adjust their diet, blood glucose testing, and exercise regimen through work-related modifications. CONCLUSIONS: For insulin-treated adults with diabetes, work system variables do not directly relate to glycemic control, but they do relate to psychosocial adaptation. Future work should examine further the specific aspects of the workplace that might affect adaptation, with the goal being to develop worksite interventions that target not only the employee with diabetes but also their supervisors and coworkers.     

Do physical disabilities affect self-perceived quality of life in adolescents?

Purpose. We examined to what extent physical disabilities (PD) affect self-perceived quality of life (QOL) among adolescents.

Method. A survey was conducted on 157 adolescents (aged 15.6 ± 1.6 years) with PD, who were attending high schools in Taiwan; 855 students (15.3 ± 1.6 years) from the same geographic regions and without a disability were recruited as controls. The Student Version of the Comprehensive Quality of Life Scale (COMQOL-S) was used to assess their subjective and objective well-being.

Results. No significant differences in overall objective QOL score were found between the two groups but the PD group was poorer in health and material well-being. Adolescents with PD scored significantly higher in overall subjective QOL and all the seven domains examined. Stratified analysis showed that older students and female students with PD had lower life satisfaction in some domains. There were no significant differences in overall objective (62.1 ± 8.3 vs. 60.9 ± 6.4; p = 0.55) or subjective (72.3 ± 12.6 vs. 74.4 ± 13.6; p = 0.15) QOL between students in mainstream and special schools.

Conclusions. With national health care and educational coverage, the QOL of adolescents with PD in Taiwan do not seem to be affected by the disabilities, regardless of whether they are in mainstream or special schools. However, the negative effect of PD on QOL becomes a concern with increasing age; females with PD also appear to have a lower subjective QOL in health and emotion.     

1型糖尿病儿童及青少年患者生存质量调查分析

目的调查1型糖尿病儿童及青少年患者的生存质量。方法采用儿童生存质量普适性核心量表和应对方式问卷分别对63例1型糖尿病儿童、青少年患者及63名患者家长进行调查。结果 1型糖尿病儿童及青少年患者生存质量总均分为(84.84±11.31)分,糖尿病患者家长的应对方式主要以成熟的应对方式(例如:解决问题、求助)为主,糖尿病儿童及青少年患者的年龄、是否独生子女、测血糖者、胰岛素注射工具和家长自责影响患者生存质量。结论关注非独生子女、青少年糖尿病患者的生存质量,鼓励儿童及青少年患者自己测血糖,以提高其自我管理能力。     

Health-related risky behaviors and their risk factors in adolescents with high-functioning autism

BACKGROUNDHealth-related risky behaviors generally refer to behaviors that have a negative impact on health and quality of life. Health-related risky behaviors in adolescents with high-functioning autism (HFA) have not been well understood so far. Adolescents with HFA may have more health-related risky behaviors than neurotypical adolescents.AIMTo investigate health-related risky behaviors and their risk factors with HFA.METHODSThis is an observational study. Our study enrolled 110 adolescents aged 12-19-years-old meeting Diagnostic and Statistical Manual of Mental Disorders 4^th edition criteria for HFA. They were recruited from Peking University Sixth Hospital. There were also 110 age, sex and nationality matched controls enrolled who came from a public school in Beijing, China. Both groups completed the Adolescents Health-related Risky Behavior Inventory. Nonparametric tests were carried out for comparison of the Adolescents Health-related Risky Behavior Inventory scores between the two groups. Expression recognition, the Inventory of Subjective Life Quality for Child and Adolescent, Chinese Wechsler Intelligence Scale for Children, Wechsler Intelligence Scale for Adult-Chinese Revised, Theory of Mind test and Autism Spectrum Screening Questionnaire were assessed in the autism group to explore factors associated with health-related risky behaviors. Multivariate regression analysis was conducted to explore the risk factors of health-related risky behaviors in the HFA group.RESULTSThe results showed that the total score of the Adolescents Health-related Risky Behavior Inventory and scores of “aggression and violence,” “suicide and self-injury,” “health compromising behavior” and “unprotected sex” subscales in the HFA group were significantly higher than those in the control group (Z range -4.197 to -2.213, P < 0.05). Among the associated factors, poor emotional experience (B = -0.268, P < 0.001), depression (B = -0.321, P < 0.001), low score of intelligence (B = -0.032, P = 0.042), low score of Theory of Mind test (B = -1.321, P = 0.003) and poor adaptation to school life (B = -0.152, P = 0.006) were risk factors. These risky behaviors may promote the occurrence of health-related risky behaviors in adolescents with HFA.CONCLUSIONThis study showed that adolescents with HFA were more likely to be involved in health-related risky behaviors. Different health-related risky behaviors have different reasons.     

Self-perception and quality of life in adolescents during treatment for a primary malignant bone tumour

PurposeAdolescents experience physical and psychosocial changes as part of their normal development. It can be hypothesized that they have lower scores on Quality of Life (QoL) and self-perception when additional changes occur due to cancer treatment. The purpose of our study was to assess self-perception and QoL of adolescents during or up to three months after adjuvant treatment for a primary malignant bone tumour.MethodsTen adolescent patients (median age of 15 years) were included. Every patient was matched with two healthy peers. Participants completed the dutch version of the Self Perception Profile of Adolescents (SPPA) to measure self-perception and the KIDSCREEN-52 questionnaire for QoL. For both instruments, normative data were available.ResultsAdolescents with a bone tumour had consistently lower scores on QoL as compared to healthy peers. Significantly on domains: physical well-being (P < 0.002), autonomy (P = 0.02), social support (P = 0.04) and school environment (P = 0.02). Scores on self-perception in this group were similar in both the study and control group.ConclusionsAdolescents with a primary malignant bone tumour during or up to three months after adjuvant treatment had lower scores on QoL (KIDSCREEN-52), significantly on domains of physical well-being and social functioning. Unlike most other quality of life instruments, the KIDSCREEN-52 contains different areas of social functioning and has shown to be a useful instrument in our patient group. Scores on self-perception in this group were similar in both study and control group.     

Supportive and nonsupportive family behaviors: relationships to adherence and metabolic control in persons with type I diabetes

The Diabetes Family Behavior Checklist (DFBC) was administered to 54 adults and 18 adolescents (less than 19 yr of age) with insulin-dependent diabetes mellitus (IDDM). Subjects and family members completed parallel forms of the DFBC at initial and 6-mo follow-up home interviews. During each of these periods, adherence was assessed via self-report, 1 wk of self-monitoring, and 24-h dietary recalls. The results showed reliable differences between adolescents and adults. More negative interactions with family members were reported by adolescents and their family members, and adolescents were in poorer metabolic control. For adults but not adolescents, negative DFBC scores were prospectively predictive of poorer regimen adherence over the 6-mo interval for measures of glucose testing, insulin injection, and dietary adherence. In addition, higher negative DFBC scores for adults were marginally associated with higher HbA1 levels (P less than 0.10). We conclude that the DFBC is a promising measure of family interaction related specifically to the IDDM regimen and that, for adults, higher levels of nonsupportive family behaviors may be related to reduced regimen adherence and poor control.     

Clinical characteristics of patients with diabetic polyneuropathy: the role of clinical and electromyographic evaluation and the effect of the various types on the quality of life

Objective: This study was performed to identify the relationship between the quality of life and polyneuropathy which is one of the complications of diabetes. Methods: Total 111 patients with diabetes mellitus were taken into the study as type 1 and type 2. Patients were accepted having polyneuropathy according to their electroneuromyography (ENMG) results. To evaluate the quality of life in the patients Short Form 36 (SF‐36) and World Health Organization Quality of Life Questionnaire abbreviated version (WHOQOL‐BREF) were used. Results: Clinical polyneuropathy was found in 46% of the patients, while polineuropathy was found in 63% of the patients with evaluation ENMG. The patients with polyneuropathy had poor quality of life according to SF‐36 and WHOQOL‐BREF (p < 0.001). The mean quality of life scores of patients who had sensoriomotor and mix polyneuropathy, were lower than sensory type and axonal polyneuropathy. Conclusion: Diabetic polyneuropathy influences the quality of life in a negative way. The quality of life scores of patients who had polyneuropathy continuing with mixed pathogenesis and sensoriomotor type, become worse for this reason, even if the patients do not have any clinical polyneuropathy, this being evaluated with ENMG.     

The Blood Glucose Monitoring Communication questionnaire: an instrument to measure affect specific to blood glucose monitoring

OBJECTIVE: The aim of this study was to present the psychometric properties of a new tool for evaluating affective response to blood glucose monitoring (BGM) in youths with type 1 diabetes and their parents. RESEARCH DESIGN AND METHODS: Study participants included 153 youths with type 1 diabetes and their parents. Each youth and parent completed the Blood Glucose Monitoring Communication (BGMC) questionnaire, Diabetes Family Conflict Scale, and Pediatric Quality of Life Inventory. Statistical analyses evaluated the psychometric properties of the BGMC questionnaires and their association with glycemic outcomes. RESULTS: Youth and parent BGMC questionnaires had acceptable internal consistency (youth, alpha = 0.77; parent, alpha = 0.82) and 1-year test-retest reliability (youth, r = 0.60; parent, r = 0.80). Higher BGMC questionnaire scores (indicating more negative affect) showed a strong association with higher levels of diabetes-specific family conflict (youth, r = 0.33; parent, r = 0.44) and poorer health-related psychosocial quality of life (youth, r = -0.50; parent, r = -0.42). Higher BGMC questionnaire scores were also associated with poorer glycemic control (youth, r = 0.28; parent, r = 0.20), even when the effects of diabetes-specific family conflict and psychosocial quality of life were controlled. Youths with BGMC questionnaire scores in the upper quartile had A1c values 1 percentage point higher (9.1%) than youths with scores in the lowest quartile (8.0%). CONCLUSIONS: The BGMC questionnaires have strong psychometric properties and are convenient measures of affect specific to BGM. Further, BGM affect is associated with glycemic outcomes and may provide a unique contribution to factors associated with glycemic control in youths.